Hi, before I start I want to say, I am aware know one here is a doctor or can see into the future and also everyone with MS is completely different. I understand.
As we know MS has come a long way in the past 30 years, with new therapies, treatments and ways of managing the disease. Comparing to 30 years ago an MS diagnosis was a lot of more worrying I imagine.
Bearing all that in mind, do people think prognosis is improving now for new people being diagnosed? Do you think we are going to see less and less people losing mobility and using a wheelchair? Are we seeing less relapses and long times of remittance? I want peoples thoughts, opinions and maybe facts if they have to share? What does it look like for new people being diagnosed!
It’s a bit early to tell. Those of us who have been on DMDs for the past couple of decades of longer are a living experiment, but we’re still living it. Wait until we dead and the evidence is in; then you’ll know.
For what it’s worth, I think it safe to surmise that I, dx in 1999 with aggressive RRMS, would be in much worse shape than I am without 20+ years of DMDs. I suppose that counts as my n=1 interim finding!
I do think it safe to say that, if there were a good time to be dx with MS, this would be it.
This is from the professor of neurology at Barts. “It is clear that the early and more effectively you treat MS the better the outcome.”
The consequences of not treating MS - by Gavin Giovannoni (substack.com)
If i recall Prof G. says 18 years from diagnosis for a walking stick and 25 years for a wheelchair. That is of course an average and before DMTs.
Anything that alters disease trajectory must be a good thing.
So, what you’re saying is?
If a person diagnosed with MS didn’t take DMT’s it would take 18 years for them to use a Walker and 25 years for a wheelchair “on average”?
So surely with modern medicine and introductions of new DMT’s and trials that yearly figure must go a lot higher when a person takes DMT’s?
However the more I research and look into things it seems to not be the case, although there is a lot more therapies and treatments I don’t see much difference in amount of relapses and length of remittance and disability!
Am I wrong or is there something I am missing!!!
The reason I’m researching and looking into thing is because I think I have MS and not diagnosed but lots of symptoms but clear MRI Scans, I’m kinda under the impression if I get a diagnosis I would be swaying towards going for HSCT fairly quickly if that’s a possibility for me and if I met the criteria?!
Thanks for reading
I think that averages like that aren’t abstractions and barely worth a damn. If your RRMS is aggressive then you need to get on an effective DMD at the earliest opportunity. That is about the only thing that I can say with the conviction of someone who is still getting about with the help of hiking poles (and grateful for it), but without DMDs would almost certainly not be by now (23 years in).
@alison100 thanks Alison I always love your comments, they all make sense. This is the thing, I’m so scared because I have symptoms but no diagnosis because scans are clear. But what if I still have MS? Then I need to be on some sort of therapy at least that’s what I am thinking. But the last neurologist said “scans are normal, No MS”. I’m going to Leeds on the 11th of august for a second opinion and also an opinion on the scans so it will be interesting. If he also says “not MS” then I have to ask “what is it then”? Is there such possibility to have all these symptoms without ever getting an explanation? Thanks for reading
Well, it’s not my opinion but that of the rather better qualified professor G, who is always a good source of reliable information.
If you wish to maintain mobility for as long as possible, I would say lifestyle changes can be a big part of the solution. Your average should improve a fair bit by keeping your muscles strong, eating a healthy diet of fresh food and not smoking.
Best take things one step at a time with diagnosis, as there are quite a few conditions that mimic MS and it can take time.
Am I sure that I have MS? - by Gavin Giovannoni - MS-Selfie (substack.com)
My dad has MS which makes me believe I have it.
Amen on lifestyle. DMDs are only part of the story; nutrition, exercise. sleep, stress management etc are also key, as Prof G reminds us.
I’ve just been through a couple of years before getting to diagnosis. Like you, I was getting worried about the delay, especially having read that prompt treatment is important.
However, I spoke to a neurologist recently and if I understood rightly, his view was that while early treatment is good, it’s not something you need to panic about (in the way you might with a fast-growing cancer). The diagnosis is sometimes really tough and they do need to get that first step right, otherwise a) you are on DMTs which have nasty side effects, for nothing, and b) your actual problem is not being treated.
You’re doing the right thing, getting a second opinion. And if there still isn’t enough evidence to conclude you have MS, you may be offered follow-up MRI scans to monitor the situation, especially if your symptoms continue to follow an MS-like pattern. So if your scans changed to abnormal, you’d know about it pretty fast.
I’m sure there are patients who never get a diagnosis, because medicine is not perfect… but I think it often just takes time for the full picture to emerge.
Thanks for replying and commenting.
The neurologist said if my symptoms were MS I would show scarring on my CNS which it doesn’t. He said that symptoms will appear when an area has been stripped of the myelin from a relapse.
But I’m still eager to go for a second opinion.
I really don’t wish to worry you but it sounds like you’re going to get the second opinion anyway so just wanted to share in case it’s helpful…
I was initially dismissed after a ‘clear’ MRI. It was through second opinion I was diagnosed. My MRIs are still reported as normal. My diagnosis was based on optic nerve signal tests (where they put wires on you and record things as you watch images on a screen - can’t remember the official name for it) a second MRI and a lumbar puncture.
I have some teeny tiny white dots on my MRIs, my neurologist says any person writing a report on it could be forgiven for calling it normal. Apparently people can get such dots for a number of reasons. They are not typical/obvious demyelination. However they are the scars from MS right there, just not as clear as in most cases and hence were overlooked.
So when you go for your second opinion I’d just say really quiz them on that MRI. Is it literally totally clear or have they made a clinical judgement that it falls within the realm of what’s ‘normal’. They are not one and the same as I found out!
I also saw an interesting chart recently, where predicted disease progression was plotted. I’ll see if I can find the link in a moment. Essentially the more abilities you retain in the first few years the better the chances that you will retain your abilities long term. No real surprise but potentially reassuring to anyone doing well that each year you keep well, the brighter the future is predicted to be.
On the scan report it states “there is no evidence of demyelination”
I also quizzed them over the phone and they said that there are no lesions on Both MRI’s. Brain and full spine.
When I had the scan it was I felt terrible and had lots of symptoms. The neurologist also said at the appt after the neuro test he doesn’t think it’s MS.
But also doesn’t know what it is either. I am still going for a second opinion.
Thanks for replying
I’m on the MS journey over 20 years now and have been in DMT’s for most of the journey and I remember asking the neuro if copaxone would help and he said “we’ll see in 20 years time” and I guess, I’m still on my feet and doing relatively well so it has done something but the brain is difficult to fix and everyone is different.
Thanks for the comment.
I’ve had symptoms for 6/7 months now and all MRI’s scans are clear this year.
I also had tingling left arm and pinky finger felt bit numb 4 years ago and Brain and c spine scans came back normal.
I just hope I can recover from all of this.
What do you suggest I do? @Redman
Difficult one if you haven’t been diagnosed yet but if the symptoms persist - I would push for a 2nd opinion and good luck
A lot my symptoms have gone away
Except for a few new ones that have developed past few weeks
But fatigue brain fog tingling lightheaded and dizziness has all lifted
The symptoms I have now is bit off balance and right leg feels tight